Long overdue public education on what at first, before formal diagnoses, is a truly horrible illness that completely takes over your life. I’ve been diagnosed for nearly 2 years and have seen quite an increase in gluten free options since then, but as the mother mentioned quite often these are reduced for plant based alternatives
I have gluten ataxia. Gluten has damaged my brain and resulted in poor balance, affected speech and terrible fatigue. These symptoms have taken me 8 years on a very strict gluten free diet to get under control-they haven’t gone away completely. I also think they should have discussed how difficult it is going to children’s parties, eating out generally etc etc. I feel that it was rather quickly discussed and needs more for people to understand the absolute life change it causes
Thankyou to this doctor for also mentioning Type 1 Diabetes as an autoimmune disease, Type 1 and Coeliac disease can often go hand in hand which is so cruel
My son was the same, horrendous 'sickness bug' back and forth to the doctor, weight loss, dark eys, grey complexion. Eventually after a blood test he was diagnosed at 4 years of age. Its about time we had more awareness as more supermarkets, shops and restaurants need to start catering for this illness. There are many food chains that are extremely poor when it comes to catering for Coeliacs.
… and gluten free food should not be more expensive than the non gluten free. 😡 At least here in Canada, the gluten free is at least $1-$3 more expensive, occasionally less product as well.
Absolute brilliant explanation its great when you've got some one who explains it and gets the issue explained 💪 I got diagnosed at 18 was a hard journey at first but living with it for so long I've got it now 🙌🏻one of kids have it too and she was only 4. I had no clue what it was when I got diagnosed I've learnt so much its good to educate people so they are aware and know what it is x💪
NEED MORE RESEARCH AND ALSO PUBLIC EDUCATION! I was diagnosed 4 years ago, but I forced this and to get tested. however, Just to make all aware I DO NOT HAVE THE GENES For it and also I was negative on my TTG test, howveer my IGA was LOW! and stil is. My spleen is in toruble, I do get ill quite a lot even on a gluten free diet, I was glutened last year and took eme 3 months to get over it!! - It is awful - before diganisis as a 21 yrs old I lost 4 stone and close to being hospitlised multiplle times due to not getting the rihgt nutrirents!
I’m 30 years old. Have had anaemia since childhood. Iron has never been absorbed properly naturally. I’ve been on iron medication since childhood. I had rickets at the age of 11 (brittle bones disease) and had stopped growing for 2 years. I was sick quite a lot and was bloated a lot. Then I developed endometriosis. After I had my third baby (last October 2023)… my health deteriorated quite a lot. I went from 55kg to now being 46kg. Have had upper abdominal pains this year. Got sent for a scan and 3 polyps were seen in my gallbladder. Most recently, since July this year to now (October 2024), I haven’t had any normal stool. It comes out loose like diarrhoea. A couple of days ago, I saw a different doctor. He told me straight away I have either Crohn’s disease or Celiac disease. Will need to now book the blood tests and find out exactly what I have
I had allergic symptoms and also suffered with poor mental health and fatigue, coeliac showed on my blood test and nhs missed it for 3 years, I only found out after looking on my records recently and had to chase for a referral
If you have coeliac disease then once you cut out gluten you should start to feel much much better v. quickly. There are loads of different types of flour out there, not just wheat, which is in everything as it's a cheap bulking agent. It's a big change, but ultimately, if you can avoid just substituting processed foods for gf processed foods, it's a very healthy diet. Good luck x
How did you get on with cornflour? I had a flare up after having gluten free pasta made from cornflour. I’ve been told to give my small intestine time to heal and then try again. All I’m eating right now is bland rice and chicken with no sauce.
I really wish I had this advice when I first started feeling ill. I figured out not eating gluten made me feel better then I learned about celiac disease. I can't go eat gluten for weeks because of how ill I get yet that's the only thing I can do to get diagnosed. It's a lose lose situation. I spoke to my gastroenterologist and they said I likely have celiac disease but I can't get a formal diagnosis unless I start eating it again. I live like I have celiac disease but can't say that I do.
Why do you think you need a formal diagnosis? You can have mine. No one ever asked to see it. You know the treatment. Staying on the diet and gettng on with your life is the only thing that matters.
@coachave87x I get snide remarks all the time with the diagnosis. No one really cares. I act normal, don't whine and complain if restaurants are not particularly interested. No one has "ever" asked to see my official diagnosis. If I were you, I would tell them yes, I have a diagnosis. It is a self diagnosis, which I think is a heck of a lot faster and more impressive than what the medical profession is producing. I wished I had diagnosed myself. Could have been healthier years before. Consider yourself both lucky and smart.
I am in that situation right now. I had to restart gluten 5 days ago after a year gluten free. I was absolutely dreading it. I have IgA deficiency so nothing is picked up on the blood tests. The first couple of days were unpleasant. Stomach ache and bloating etc. then the neurological symptoms started to kick in. Mild Internal tremors which stop me from sleeping. Drop foot. Balance and walking issues. I thought I couldn’t go on. But now, 5 days in, all those symptoms have eased off a little. I think my body was in shock at first. Now I’m thinking, 5 more weeks and it will be all over and I can go back to gluten free. I will never complain about a gluten free diet again. Also, I had undiagnosed iron deficiency (not sure how the haematologist missed this, and neither is the gastroenterologist ) so I am finding my fatigue is eased relatively quickly by resting. But the main reason I am doing this is because of my son and grandson have stomach issues. I am doing it for them, which makes me feel a little less sorry for myself. And hopefully, if it is diagnosed as coeliac, it might stop waiters doing a little roll of the eyes when I say that I am gluten sensitive. 😝
Same I’m too sick to go back to eating gluten for testing but I know my mind and body is better off without gluten and also soy dairy spinach and too much red meat
Ive been diagnosed for 14yrs and lots have changed in this country but still more needs to b done,eating places cater for vegans and vegetarians which is a choice and not an illness but not for celiacs,and supermarkets have gluten free products dottered around the supermarket which makes it harder to shop
I was living with it for alot of yrs but the doctors kept puting my symptoms down to other things,then i got so ill which turned out to b something wrong with my blood it took yrs to sort and as a result my gut is still damaged,so some things i shud b able to eat i still dont tolerate,and i have to have b12 injections for life
Well logically the first step would be to go strict GF to see if it makes any difference. if symptoms disappear then it should be pretty obvious that it (gluten) is a problem. At that point then you can go back to consuming gluten and try for a diagnosis or stay on the diet and get on with your life. It's not complicated unless you try to eliminate everything else first and then start to test for Celiac at the very last. Just my opinion.
Restaurants and takeaway places need to take this more seriously. Everywhere should provide a gluten free, milk free option and make the effort to make sure theres no cross contamination. Watching my sibling not be able to go out for a meal or eat out anywhere because of the lack of care or options is sad.
Speak with your $$$ !!! Don't buy anything that promotes illness from any stores or restaurants & lovingly spread the information to all your loved ones & friends ❤
Long overdue public education on what at first, before formal diagnoses, is a truly horrible illness that completely takes over your life. I’ve been diagnosed for nearly 2 years and have seen quite an increase in gluten free options since then, but as the mother mentioned quite often these are reduced for plant based alternatives
Need more noise about ceoliac in the media and in the public in general. Well done on having this segment 👏
I have gluten ataxia. Gluten has damaged my brain and resulted in poor balance, affected speech and terrible fatigue. These symptoms have taken me 8 years on a very strict gluten free diet to get under control-they haven’t gone away completely.
I also think they should have discussed how difficult it is going to children’s parties, eating out generally etc etc.
I feel that it was rather quickly discussed and needs more for people to understand the absolute life change it causes
@@grahambowler-pp1gs it is seen as remove gluten and your fine! But it doesn’t quite work like that
Thankyou to this doctor for also mentioning Type 1 Diabetes as an autoimmune disease, Type 1 and Coeliac disease can often go hand in hand which is so cruel
My son was the same, horrendous 'sickness bug' back and forth to the doctor, weight loss, dark eys, grey complexion. Eventually after a blood test he was diagnosed at 4 years of age. Its about time we had more awareness as more supermarkets, shops and restaurants need to start catering for this illness. There are many food chains that are extremely poor when it comes to catering for Coeliacs.
… and gluten free food should not be more expensive than the non gluten free. 😡 At least here in Canada, the gluten free is at least $1-$3 more expensive, occasionally less product as well.
@@mocat1Naturally GF food which more of us should be consuming costs exactly the same.
Absolute brilliant explanation its great when you've got some one who explains it and gets the issue explained 💪 I got diagnosed at 18 was a hard journey at first but living with it for so long I've got it now 🙌🏻one of kids have it too and she was only 4. I had no clue what it was when I got diagnosed I've learnt so much its good to educate people so they are aware and know what it is x💪
Excellent piece!!! Valuable!
Honestly felt like I was dying for months doctors pointed at my mental health they thought I was crazy😂
I have ceoliac disease and have since I was 8 it's nice knowing other people have it to x
I have celiac disease
And I wasn't diagnosed till I was 18 eaten gluten it makes me so unwell were I am in hospital
NEED MORE RESEARCH AND ALSO PUBLIC EDUCATION!
I was diagnosed 4 years ago, but I forced this and to get tested. however, Just to make all aware I DO NOT HAVE THE GENES For it and also I was negative on my TTG test, howveer my IGA was LOW! and stil is. My spleen is in toruble, I do get ill quite a lot even on a gluten free diet, I was glutened last year and took eme 3 months to get over it!! - It is awful - before diganisis as a 21 yrs old I lost 4 stone and close to being hospitlised multiplle times due to not getting the rihgt nutrirents!
Chronic anemia is a big sign of this disease, if you can’t absorb iron over a long period, ask to be tested for coeliac
I’m 30 years old. Have had anaemia since childhood. Iron has never been absorbed properly naturally. I’ve been on iron medication since childhood. I had rickets at the age of 11 (brittle bones disease) and had stopped growing for 2 years. I was sick quite a lot and was bloated a lot. Then I developed endometriosis. After I had my third baby (last October 2023)… my health deteriorated quite a lot. I went from 55kg to now being 46kg. Have had upper abdominal pains this year. Got sent for a scan and 3 polyps were seen in my gallbladder. Most recently, since July this year to now (October 2024), I haven’t had any normal stool. It comes out loose like diarrhoea. A couple of days ago, I saw a different doctor. He told me straight away I have either Crohn’s disease or Celiac disease. Will need to now book the blood tests and find out exactly what I have
@@zaraart2474 yes blood test very easy to and results are quick! Hope you find out soon
I had allergic symptoms and also suffered with poor mental health and fatigue, coeliac showed on my blood test and nhs missed it for 3 years, I only found out after looking on my records recently and had to chase for a referral
Its no joke. Waiting om my results. Its in my family and i feel as if Im dying..
If you have coeliac disease then once you cut out gluten you should start to feel much much better v. quickly. There are loads of different types of flour out there, not just wheat, which is in everything as it's a cheap bulking agent. It's a big change, but ultimately, if you can avoid just substituting processed foods for gf processed foods, it's a very healthy diet. Good luck x
How did you get on with cornflour? I had a flare up after having gluten free pasta made from cornflour. I’ve been told to give my small intestine time to heal and then try again. All I’m eating right now is bland rice and chicken with no sauce.
I really wish I had this advice when I first started feeling ill. I figured out not eating gluten made me feel better then I learned about celiac disease. I can't go eat gluten for weeks because of how ill I get yet that's the only thing I can do to get diagnosed. It's a lose lose situation. I spoke to my gastroenterologist and they said I likely have celiac disease but I can't get a formal diagnosis unless I start eating it again. I live like I have celiac disease but can't say that I do.
Same ☹️
Why do you think you need a formal diagnosis? You can have mine. No one ever asked to see it. You know the treatment. Staying on the diet and gettng on with your life is the only thing that matters.
@coachave87x I get snide remarks all the time with the diagnosis. No one really cares. I act normal, don't whine and complain if restaurants are not particularly interested. No one has "ever" asked to see my official diagnosis. If I were you, I would tell them yes, I have a diagnosis. It is a self diagnosis, which I think is a heck of a lot faster and more impressive than what the medical profession is producing. I wished I had diagnosed myself. Could have been healthier years before. Consider yourself both lucky and smart.
I am in that situation right now. I had to restart gluten 5 days ago after a year gluten free. I was absolutely dreading it. I have IgA deficiency so nothing is picked up on the blood tests. The first couple of days were unpleasant. Stomach ache and bloating etc. then the neurological symptoms started to kick in. Mild Internal tremors which stop me from sleeping. Drop foot. Balance and walking issues. I thought I couldn’t go on. But now, 5 days in, all those symptoms have eased off a little. I think my body was in shock at first. Now I’m thinking, 5 more weeks and it will be all over and I can go back to gluten free. I will never complain about a gluten free diet again. Also, I had undiagnosed iron deficiency (not sure how the haematologist missed this, and neither is the gastroenterologist ) so I am finding my fatigue is eased relatively quickly by resting. But the main reason I am doing this is because of my son and grandson have stomach issues. I am doing it for them, which makes me feel a little less sorry for myself. And hopefully, if it is diagnosed as coeliac, it might stop waiters doing a little roll of the eyes when I say that I am gluten sensitive. 😝
Same I’m too sick to go back to eating gluten for testing but I know my mind and body is better off without gluten and also soy dairy spinach and too much red meat
Ive been diagnosed for 14yrs and lots have changed in this country but still more needs to b done,eating places cater for vegans and vegetarians which is a choice and not an illness but not for celiacs,and supermarkets have gluten free products dottered around the supermarket which makes it harder to shop
I was living with it for alot of yrs but the doctors kept puting my symptoms down to other things,then i got so ill which turned out to b something wrong with my blood it took yrs to sort and as a result my gut is still damaged,so some things i shud b able to eat i still dont tolerate,and i have to have b12 injections for life
Well logically the first step would be to go strict GF to see if it makes any difference. if symptoms disappear then it should be pretty obvious that it (gluten) is a problem. At that point then you can go back to consuming gluten and try for a diagnosis or stay on the diet and get on with your life. It's not complicated unless you try to eliminate everything else first and then start to test for Celiac at the very last. Just my opinion.
Restaurants and takeaway places need to take this more seriously. Everywhere should provide a gluten free, milk free option and make the effort to make sure theres no cross contamination. Watching my sibling not be able to go out for a meal or eat out anywhere because of the lack of care or options is sad.
Also soy free and some options for grain free
Speak with your $$$ !!!
Don't buy anything that promotes illness from any stores or restaurants & lovingly spread the information to all your loved ones & friends ❤
My former geography teacher has celiac disease
My daughter got it
Worst disease, so difficult to live with
@LadyDianaFrancesSpencer.x . My daughter makes her own food. And I love what she makes for me aswell
I needed an endiscooy also yo confirm it
How did they confirm this